I was diagnosed with AS less than a year ago, although I suppose I’ve known I’ve had it for quite a few years. It started in my mid 20s with back soreness that developed into debilitating pain in my early 30s. I had been to quite a few doctors and specialists and the best advice I could get from any of them (who is now one of our leading local sports orthopaedic surgeons) was “walk tall!” I couldn’t believe it. I was barely walking and needed serious physical help to get out of bed and this guy could only tell me to “walk tall” as though there was nothing wrong.
Fortunately I was given the name of an Osteopath/Remedial Massage Therapist who treated me intensively for about a year. He added acupuncture to the therapy and finally the pain dissipated and I could lead a normal life. Over the next 20 odd years I’d go through bouts of pain and stiffness but pretty much learnt to cope with it. The best period was while I was active in owner building a house which got me fit again and mobile and life was pretty good. Being fit and healthy is so important on so many ways!
There’s always been some pain but about 2 years ago I started cycling and jogging to train with my wife, who had taken up triathlons at age 48 and has since completed 2 Ironman races. Very proud of her! J I just wanted to train and get fit with her and I was improving. But my back started to ache again and a local chiropractor was recommended. He immediately suggested I get X-Rays and I was formally diagnosed with Ankylosing Spondilitis. His treatment has been aimed entirely at maintaining the mobility I have left and he has been excellent. He’s a strong advocate of natural health and I wouldn’t be at the stage I am now without him.
A couple of years before all this happened, my brother (3 years younger) had been diagnosed with AS and had jumped through all the hoops to get on to Humira and we’ve seen a huge improvement in him, although he had to cope with some initial side effects as his immune system adjusted. Fortunately his life as a personal trainer helped with his posture and mobility but his life is virtually pain free now.
So I decided to see his rheumatologist and follow the same course. It took over 5 months to get in and the visit really shocked me. I thought I had problems with only a few vertebrae but as he went through the X-Rays he identified that both Sacro-iliac joints are fused, 4 in the lumbar region, 1 in the thoracic region and 3 in the cervical region plus several spurs and more fusing underway. My AS is well advanced with 1/3 of my spine now fused and my poor posture is now the best it will ever be.
He prescribed an anti-inflammatory, which made me ill, so he prescribed a new one which I’m just starting but would really prefer to avoid. I’ve now started the process to get on to Humira if I can qualify and he’s also happy for me to continue with my chiro. I have to keep exercising, stretching and doing all the things I was doing right before and he’s even happy for me to continue cycling. This all sounded good and even though worse than I expected there is now a real plan and a real diagnosis.
But in the back of my mind I’m worried about the side effects of Humira and in fact all drugs, even the NSAIDs for long term, lifetime use. So I researched madly into natural remedies for treating AS and, like many others, have come across the Low Starch diet from Dr Ebringer and have also started an organic pro-biotic food to help improve my gut health. I’m a little disappointed my rheumatologist didn’t discuss diet but I’ve just completed week 1 and while it’s too early to tell if it’s going to make a difference I’m looking to the future optimistically.
I found your site really informative and helpful in reading what others have gone through and continue to do. There’s obviously no magic wand to cure this but reading many of the stories has helped me commit more strongly to try the natural method of the low-starch diet. Here is my story so far and I hope it might help some others come to terms with what they’re experiencing.
Logan, Queensland, Australia (about halfway between Brisbane and the Gold Coast)